Wednesday, February 2, 2011

The ADAP Advocacy Association (aaa+) this past weekend (Jan. 29-30th) successfully convened the year's first national gathering of ADAP stakeholders in Fort Lauderdale, Florida for its 2011 Emergency ADAP Summit. The two-day event focused on the continuing crisis facing the cash-strapped AIDS Drug Assistance Programs, filled with important updates, lively discussions and timely grassroots advocacy trainings. Held in the epicenter of the ongoing crisis - Broward County, Florida - ADAP stakeholders received the most up-to-date analysis from Murray Penner of the National Alliance of State & Territorial AIDS Directors, or NASTAD (Murray also represented the Fair Pricing Coalition), Tom Liberti of the Florida Department of Health and various pharmaceutical company representatives talking about their respective patient assistance programs. But probably one of the most constructive sessions involved a grassroots advocacy training led by Christine Campbell and Larry Bryant of Housing Works, Joey Wynn of Broward House and Joseph Terrill of AIDS Healthcare Foundation. The session demonstrated that while many HIV/AIDS activists don't necessarily agree with one another on priorities or strategies, we can nonetheless engage in constructive dialogue.

Some of the Summit presentations are available online. Ironically, leading up to the Summit I was asked some of the following questions, "Why are you partnering with AIDS Healthcare Foundation?" "Why are you allowing the pharmaceutical companies to participate?" "Why is NASTAD being asked to present at a patient advocacy conference?"

I addressed these questions - and others - during the summit with the following very simple response: "The ongoing ADAP crisis facing people living with HIV/AIDS is a war, and why in the world would we go into battle leaving half of our army behind at the base?"

Additionally, I addressed the 800 pound gorilla in the room, which was why some organizations - such as NASTAD, NAPWA, NMAC, The AIDS Institute - were more tepid in their advocacy last year compared to other groups, such as AIDS Healthcare Foundation, Housing Works, ACT UP, C2EA, CANN and aaa+? My response might have surprised some of the attendees, but it came from the heart. I summarized that neither "side" was right or wrong, because both were fighting for the very same thing: access to care and treatment for people living with HIV/AIDS. It boiled down to simply a different approach to dealing with the crisis. But it was important to note that both "sides" spent too much time fighting one another, leveling charges and counter-charges and diluting its advocacy with conflicting messages.

Ironically, Hill staffers complained about the very same thing regardless of their political party.

Hopefully in 2011, we have collectively learned from our mistakes from last year and will strive to work more closely together to ensure that the 5,779 people living with HIV/AIDS on waiting lists are guaranteed the access to care and treatment they deserve and need. That was one of the main tenants behind convening the 2011 Emergency ADAP Summit in the first place.

Local blogger, Mark S. King, captured the Summit's energy and succcess with his video blog, "My Fabulous Disease." Mark's blog takes you behind-the-scenes at the summit, where you can see what makes our leading advocates tick, including their candid frustrations and some very moving displays of dedication and fatigue from years of struggle. Best of all, get simple instructions on how you can make a difference as an advocate for this issue!